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Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.

As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.

Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?

Interested in more discussions like this? Go to the Sarcoma Support Group.

Terriebikes | @bicycle3 | Jan 20, 2023
In reply to @barman "Of course. And yep, I live in India. West Bengal to be precise. And thank you..." + (show)
@barman

Of course. And yep, I live in India. West Bengal to be precise. And thank you for sharing, we hope you are fine now. May I ask you when did you start its treatment and how are you now? Has it re-occurred?

Jump to this post

Surgery 2021.
Then chemo and radiation.
The broken tibia,
2022, Dec radiation and chemo for spots on lungs
Now waiting fór second opinion.

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1 reply
sonshine161 | @sonshine161 | Jan 20, 2023

Hi,

I just had a left pneumonectomy on Nov 30. Upon further examination they tell me my tumor was undifferentiated sarcomatoid carcnoma. It was also found in 5/19 lymph nodes. They took out all the cancer they could find along with the lung . No metastasis . Next step is a scan in may. Should i do anything in the mean time?

Jeff

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2 replies
mary64300 | @mary64300 | Jan 20, 2023
In reply to @mp01 "Hello. I'm 60 years old and was diagnosed with rhadomyosarcoma two years ago. I'm still under..." + (show)
@mp01

Hello. I'm 60 years old and was diagnosed with rhadomyosarcoma two years ago. I'm still under treatment as the tumor has jumped from one place to another. Is there anyone out there has the same diagnose as mine? I was told this is a very rare disease in older age because it's mostly only children.

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Hello mp01. I have a different kind of cancer. But it is also very rare in older adults. I have found very little information and doctors at Mayo partner between specialties to provide the best treatment. In my case, both gynecology and neurology oncologists decided on the care. The fact that children and adults dont always respond the same way to treatments is a wild card. But i was ordered extra tests on the tumor removed through Tempus, to better understand it since it is poorly differentiated. This may help tune up the treatment. I am not sure what the criteria is for those extra tests.
Hang n there. I went through my first cycle of chemo. Very tired but positive. I know it is a long road so i started practicing my walking 😊

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1 reply
mp01 | @mp01 | Jan 20, 2023
In reply to @mary64300 "Hello mp01. I have a different kind of cancer. But it is also very rare in..." + (show)
@mary64300

Hello mp01. I have a different kind of cancer. But it is also very rare in older adults. I have found very little information and doctors at Mayo partner between specialties to provide the best treatment. In my case, both gynecology and neurology oncologists decided on the care. The fact that children and adults dont always respond the same way to treatments is a wild card. But i was ordered extra tests on the tumor removed through Tempus, to better understand it since it is poorly differentiated. This may help tune up the treatment. I am not sure what the criteria is for those extra tests.
Hang n there. I went through my first cycle of chemo. Very tired but positive. I know it is a long road so i started practicing my walking 😊

Jump to this post

Hi Mary 64300. Thank you for sharing your story. I heard other cancers, most people resumed to their normal life activities after surgery and treatments. Mine, it was and still a roller coaster since 2020. After chemo and radiation, the tumor is still active and jumped around. I'm doing my best fighting it but sometimes it's just too much that I just wanted to give up. But our life is in God hand. Until then, we have to fight and fight to our last breathe. I wish you lots of strength to go through this rough journey and regain your health. 🧡

REPLY
1 reply
mary64300 | @mary64300 | Jan 20, 2023
In reply to @sonshine161 "Hi, I just had a left pneumonectomy on Nov 30. Upon further examination they tell me..." + (show)
@sonshine161

Hi,

I just had a left pneumonectomy on Nov 30. Upon further examination they tell me my tumor was undifferentiated sarcomatoid carcnoma. It was also found in 5/19 lymph nodes. They took out all the cancer they could find along with the lung . No metastasis . Next step is a scan in may. Should i do anything in the mean time?

Jeff

Jump to this post

Hello Jeff. This is a long time to wait until May but your body may need to heal too.
I have a different kind of cancer but an aggressive one by nature. I got surgery on october 28 and they removed all they could find., too. Ct scan done, no apparent metastasis, 1 lymph node positive out of 32 removed.
So no local radiations
But i was started on adjuvant chemotherapy this week. They even wanted to start 2 weeks ago.
I dont know where you are treated but maybe getting a second opinion would help?
I originally had an initial consultation with an oncologist on 11/4. I contacted Mayo on an impulse because it was a month away at the time. On october 27, i had a series of tests scheduled at Mayo and on october 28, surgery needed was done at Mayo too. Since then, i have felt very well taken care of and never let down.
In my case the second opinion helped a lot. But everyone is different 🙂
I wish you good luck in your journey.

REPLY
1 reply
mary64300 | @mary64300 | Jan 20, 2023
In reply to @mp01 "Hi Mary 64300. Thank you for sharing your story. I heard other cancers, most people resumed..." + (show)
@mp01

Hi Mary 64300. Thank you for sharing your story. I heard other cancers, most people resumed to their normal life activities after surgery and treatments. Mine, it was and still a roller coaster since 2020. After chemo and radiation, the tumor is still active and jumped around. I'm doing my best fighting it but sometimes it's just too much that I just wanted to give up. But our life is in God hand. Until then, we have to fight and fight to our last breathe. I wish you lots of strength to go through this rough journey and regain your health. 🧡

Jump to this post

This is a very long and hard journey, since 2020. I understand the feeling of helplessness. It takes strength to keep going and at my stage i can only imagine.
My type of cancer also tends to recur often from what i read. Hence a “boosted” chemo treatment from the start.
But we never know so i prepare for the worse and hope for the best.
Thank you for the warm wishes. I will do my best like you do so well. Like you said, it is ultimately not in our hands.

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sonshine161 | @sonshine161 | Jan 20, 2023
In reply to @mary64300 "Hello Jeff. This is a long time to wait until May but your body may need..." + (show)
@mary64300

Hello Jeff. This is a long time to wait until May but your body may need to heal too.
I have a different kind of cancer but an aggressive one by nature. I got surgery on october 28 and they removed all they could find., too. Ct scan done, no apparent metastasis, 1 lymph node positive out of 32 removed.
So no local radiations
But i was started on adjuvant chemotherapy this week. They even wanted to start 2 weeks ago.
I dont know where you are treated but maybe getting a second opinion would help?
I originally had an initial consultation with an oncologist on 11/4. I contacted Mayo on an impulse because it was a month away at the time. On october 27, i had a series of tests scheduled at Mayo and on october 28, surgery needed was done at Mayo too. Since then, i have felt very well taken care of and never let down.
In my case the second opinion helped a lot. But everyone is different 🙂
I wish you good luck in your journey.

Jump to this post

Thanks for your reply. I've been getting treated at Dana Farber. So you think I shouldn't wait until May?

Jeff

REPLY
1 reply
mary64300 | @mary64300 | Jan 20, 2023

Second opinions are never a bad idea, i believe. To me, it helped me feel more in control to do something. I was on the fence, not knowing what to do but it is never a bad idea to get more informed.
It is not about questionjng a provider capabilities and knowledge. It is about finding your best chances against this disease.
Information, feeling like you can control a few things around you can help you too. Internet information is one thing but having another flesh and blood specialist talk with you is priceless.
Best that can happen, the second opinion agrees with the first one, and you can focus on healing 😊
Or you may have more choices availble to you for your care. I see that as a win win.

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pb82 | @barman | Jan 21, 2023
In reply to @bicycle3 "Surgery 2021. Then chemo and radiation. The broken tibia, 2022, Dec radiation and chemo for spots..." + (show)
@bicycle3

Surgery 2021.
Then chemo and radiation.
The broken tibia,
2022, Dec radiation and chemo for spots on lungs
Now waiting fór second opinion.

Jump to this post

Thank you so much.. please do keep us updated.

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1 reply
zazu | @zazu | Jan 21, 2023
In reply to @sonshine161 "Thanks for your reply. I've been getting treated at Dana Farber. So you think I shouldn't..." + (show)
@sonshine161

Thanks for your reply. I've been getting treated at Dana Farber. So you think I shouldn't wait until May?

Jeff

Jump to this post

From what I’ve learned, Dana Farber is one of the top (if not THE top) sarcoma centers in the world. My tissues were sent there for pathology from Chicago

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